Nursing Book Club

Brain on Fire: My Month of Madness

Case No. 217

Some people like “chick lit” for light weekend reading, but I’ll take a well-written medical mystery any day, especially a mystery written as a memoir, like Susannah Cahalan’s Brain on Fire: My Year of Madness. Cahalan, a newspaper writer from New York, uses her skills as an investigative journalist to examine the mysterious disease that nearly destroyed her life.

Insect Paranoia

In 2009, Cahalan, who was then writing for the New York Post, woke up one morning with what looked like two insect bites on her arm. Like everyone with an apartment in New York, she immediately began worrying about bedbugs. When she went to work, Cahalan, who always prided herself on her work ethic, was so distracted that she found herself unprepared for a meeting. Later in the day, she called an exterminator to deal with what she feared was an insect infestation, purging her apartment of years’ worth of work to prepare for the appointment.

What Cahalan didn’t know at the time was that obsession with insects can be a sign of impending psychosis. Her uncharacteristic fit of paranoia was also accompanied by physical symptoms, including the first signs of a migraine, some limb numbness and the fatigue that comes with a viral illness.

Things got worse from there. Soon, her job performance deteriorated, relationships suffered and seven months of her life became a blur. She recalls waking up strapped to a hospital bed with a guard nearby and says her bizarre behavior could easily have led to long-term psychiatric commitment.

Finding Answers

Those around Cahalan at the time assumed she was suffering a nervous breakdown, going through bipolar manic and depressive episodes, drinking too much or reacting to the anti-seizure medication she’d been prescribed. Today, she describes her behavior as a symptom of a serious physical illness.

What was going on? Years later, doctors still cannot pinpoint the pathogen that attacked Cahalan or how or where it may have found her. However, she was eventually diagnosed with a rare form of anti-NMDA-receptor autoimmune encephalitis that had only been identified two years earlier. Because its symptoms can be easily confused with those of schizophrenia, Cahalan speculates that the condition may have been the real cause of many long-term psychiatric hospitalizations.

Fortunately, living in New York City gave Cahalan access to one of the few physicians familiar with the disease and its treatment, so she was able to make a slow recovery.

Lost Time

After her hospitalization, Cahalan began keeping a diary, which allowed her to see her progress from that point. She later interviewed her friends, family and physicians to put together the missing pieces of her illness.

Cahalan includes some great explanations and diagrams of how the brain functions and describes some of the testing that was done. Along the way, we learn quite a bit about the rehabilitative process of patients with brain diseases.

As hospital nurses, we are used to seeing patients discharged and feeling happy that they can return to their homes. However, the patients may be radically changed, disappointed at their slow progress or forced to cope with the realization that they may never return to their pre-illness selves. Brain on Fire: My Year of Madness allows us to see that process through the patient’s eyes.

Despite the misfortune of her life-changing illness, Cahalan nevertheless focuses on the positive. The $1 million cost of her treatment was largely covered by insurance and, as only the 217th person to be diagnosed with that form of encephalitis, she considers herself lucky that she didn’t slip through the cracks in the system. She is now working to publicize the disease in hopes of helping others.